Board of Directors
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The CRBF Board of Directors is made up of passionate, dedicated professionals that all have at least one family member affected by CRB1 retinal disease. This motivated group works together to manage all facets of the organization, as well as working closely with the Scientific Advisory Board to ensure funding is spent wisely and effectively on projects that will move CRB1 to treatments and cures.
Kristin Smedley
CEO
Kristin Smedley is a professional speaker, author, and advocate for the blind and visually impaired. She holds a BS in Elementary Education and had a thriving career in the field, until a rare eye disease happened. Kristin’s two sons were diagnosed with Leber’s Congenital Amaurosis caused by mutations in the CRB1 gene. In 2009 Kristin added a new life focus: coordinating research toward treatments for this disease. Kristin lives in Bucks County, PA with her three children, Michael, Mitchell and Karissa. When she is not fundraising and raising awareness for CRBF you can find her cheering at Karissa’s soccer and basketball games, crazily applauding Mitchell’s performances on stage, or singing along with Michael and his band at their “gigs”.
Kim Hoffman
Treasurer
Kim works full time as a controller for an engineering firm in Youngstown, Ohio. Her and her husband Mike of 16 years have three children; Sarah, Olivia and Sean. Upon receiving the diagnosis of their daughter Olivia’s CRB1 related retinal dystrophy, Kim and her family became active in fundraising efforts for Curing Retinal Blindness Foundation. They are also active members in their local Lions Club where Mike currently serves as President and Kim recently earned the Knight of the Blind award. Kim and her husband are no strangers to fundraising for non-profits. They met serving on the board of a local animal shelter where they planned fundraising events and were also involved in a large campaign raising enough funds to allow the shelter to purchase land and build a large full-service state of the art facility. Kim loves the outdoors and spending as much time as possible with her family.
Tricia Smith
Secretary
Tricia Smith works full time in the Medical Staff office of a behavioral healthcare hospital. Tricia’s daughter, Gracyn,was diagnosed with Retinitis Pigmentosa (RP) at the age of 5. Tricia is also the proud mother of two amazing (un-affected) boys. Tricia believes that without this foundation and the families that are so involved with raising funds and networking with scientists, we would not have the HOPE that there WILL be a cure for Gracyn! Tricia is married to her high school sweetheart, Scott, and we still live in the same town we grew up in. Outside of her career and work with the CRBF, and you will often find her cheering for her children on the basketball court, tennis court and on stage.
Lisa Billingsley
Member
Lisa Billingsley is an accredited Kitchen and Bath Designer. She holds a Bachelor’s Degree in Psychology from the University of Missouri, and an Associates of Arts in Interior Design from Johnson County Community College. She is self-employed as the Lead Designer and Owner of Billingsley Warren Design, LLC. Lisa is an active member of the Curing Retinal Blindness Foundation, Board of Directors since 2014. She is determined to find a cure for her son Jacob, and all others with retinal blindness. She has traveled nationwide representing the CRBF to scientists, doctors, and fellow CRB1 families. Her mission for vision for all is a lifelong commitment. Lisa is married to her husband, Gregory, since 2004. They have four children, Lucas, Nathan, Jacob, and Ella. Together they live their best life when surrounded by their cherished family and friends. They escape to the water whenever possible, and cheer on their Kansas City Chiefs and St. Louis Cardinals with exuberant passion.
Ashley Cope
Member
Ashley has been an active member of the Curing Retinal Blindness Foundation since she received her son Everett’s CRB1 retinal dystrophy diagnosis in the Fall of 2022. At the time, Everett was 5 years old and both Ashley and her husband Aaron began searching for answers and hope, when they came upon the small but mighty CRBF organization and team. Ashley and Aaron are parents to two wonderful children, Lily and Everett, and enjoy watching them shine and grow in their academics and activities. Ashley is the Executive Director of Darkroom Faith, a Christian non-profit that offers free video curriculum and resources for youth pastors. She is hopeful that a CRB1 treatment is coming soon and thankful for the tireless efforts of the entire CRBF team.
Brooklyn Spirito
Member
Brooklyn has served as a board member of the Curing Retinal Blindness Foundation since 2019. Two of her daughters received the diagnosis of CRB1 retinal dystrophy; her family has since been deeply committed to supporting the foundation’s mission. Brooklyn and her husband, Nick, have three daughters: Nadine, Vivian, and Winnie. Her oldest daughter, Nadine, was 3 when she received her diagnosis, and her younger sister, Vivian, was 1. Their family enjoys spending time together, movie nights, and traveling. Nadine enjoys playing the violin, and Vivian enjoys gymnastics; neither allows their diagnosis to hold them back. Brooklyn is the owner of a mental health private practice that provides mental health counseling throughout Indiana. She is grateful to be part of a motivated and dedicated team committed to curing CRB1 and is dedicated to supporting CRBF until their mission is complete.
